Blog Post Published September 2009

Unattended Dementia

Dementia Reconsidered: the Person Comes First

I have just read a touching segment by Tom Kitwood in his book 'Dementia Reconsidered: the Person Comes First '. Tom says that after 'spending time in settings that epitomized the old culture of care, with its malignant social psychology and pervasive neglect, I attempted to express, imaginatively, something of what the experience of unattended dementia might be like.' Here it is:

Here is an excerpt:

You are in a swirling fog, and in half-darkness. You are wandering around in a place that seems vaguely familiar. And yet you do not know where you are; you cannot make out whether it is summer or winter, day or night. At times the fog clears a little, and you can see a few objects really clearly. But as soon as you start to get your bearings, you are overpowered by a kind of dullness and stupidity. Your knowledge slips away, and again you are utterly confused.

While you are stumbling in the fog, you have an impression of people rushing past you, chattering like baboons. They seem to be so energetic and purposeful, but their business is incomprehensible.

Occasionally you pick up fragments of conversation, and have the impression that they are talking about you. Sometimes you catch sight of a familiar face. But as you move towards the face it vanishes, o turns into a demon. You feel desperately lost, alone, bewildered, frightened.

In this dreadful state you find that you cannot control your bladder, or your bowels. You are completely losing your grip; you feel dirty, guilty, and ashamed. It’s so unlike how you used to be, that you don’t even know yourself. And then there are the interrogations.

Official people ask you to perform strange tasks which you cannot fully understand: such as counting backwards from one hundred, or obeying the instruction: ' If you are over 50, put your hands above your head'. You are never told the purpose or the results of these interrogations. You’d be willing to help, eager to co-operate, if only you knew what it was all about, and if someone took you seriously enough to guide you.

This is the present reality: everything is falling apart, nothing gets completed, and nothing makes sense. But worst of all, you know it wasn’t always like this. Behind the fog and the darkness there is a vague memory of good times, when you knew where and who you were, when you felt close to others, and when you were able to perform daily tasks with skill and grace; once the sun shone brightly and the landscape of life had richness and pattern. But now all that has been vandalized, ruined, and you are left in chaos, carrying the terrible sense of a loss that can never be made good.

Once you were a person who counted. Now you are a nothing, and good for nothing. A sense of oppression hangs over you, intensifying at times into naked terror. Its meaning is that you might be abandoned for ever, left to rot and disintegrate into unbeing.


michelle 5th Jan 2010 Diversional Therapist


I think anybody who works in the aged care industry, including doctors etc. (particularly with dementia affected residents) should read this excerpt, it will give people a new understanding of the person trapped within this disease.
Lesley 2nd Oct 2009 Recreation Therapist


Sad, Scary, unfair, So unfair, to feel so crippled so disabled from anymore comprehension in any form. Especially after a life which you managed to articulate, purchase your freedom for, through war for many of our residents. Dementia is no reward so lets contribute to the research to disable this crippling diaster.
Solange 22nd Sep 2009 Diversional Therapist


Yes...we need to be mindful of what it feels like to suffer from dementia. I have added a print version to all blog posts now - you will find the link under the blog title. This will enable you to print just the blog content and not the whole website!
jeannette 21st Sep 2009 occupational therapist assistant


would love a copy of what u have written,but my computor will not let me,can u help me Solange ?
jeannette 19th Sep 2009 occupational therapist assistant


read the blog on dementia reconsidered my god how awful he makes it sound ,although i witness this stage at work never quite looked at it like that before,so sad & so scary

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